Time between colectomy and j-pouch

[QueenGothel]

Rowan is doing great with her ileostomy. We are schedule for Barium enema xrays July 2nd to check the j-pouch for leaks. The week of July 16th we are to reconnect. She has 4 more doses of Pred and that will be done. Yay!

The diet has been going ok. We did have to start imodium at night to slow things down a bit. Since we started that the bags seem to be lasting better. We still change on the 3rd morning.

The reconnect is a scary issue for Rowan and I. Everyone else is very excited about it. I have fears as does Rowan. The obvious stuff for me... Incontinence and pouchitis. I know these are bridges I will have to cross but I fear I am not ready. she is so happy now and I don't want her to be in pain again. Regardless the pain will hopefully never be equal to UC. I just want to her to enjoy happiness a bit longer. Everyone else want the reconnect before school so she doesn't feel different from the other kids. I think Rowan is fearing UC. Even though she tells people she does have UC anymore... She could be fearful of the bleeding and prolapse. Which cannot happen but she doesn't understand.

The moon face is gone. She is back to her sweet self. No more mood swings. I will be happy to end the pred finally.

Take care all I hope everyone is doing well. I will keep checking in.

 

[DustyKat]

Thanks for the update Mary!

My goodness, how fab to hear that all is going wonderfully well. YAY! I certainly understand your fears hun and I would be exactly the same! I would also find it so hard to let go of the current status quo and dive into the relatively unknown, especially after all you have been through...:hug:

And little Rowan, bless her...:hug:...what an amazing little girl she is. So hard at any age to have to deal with all this but in one so young it's doubly hard to have to understand. You must be so very, very proud of her Mum. You are doing a fab job Mary, well done! :rosette1:

Thinking of you, :heart:
Dusty. xxxxxxxx

 

[Sascot]

That's great that she is doing so well! It must be nice to see her happy and enjoying life again. I would also be nervous to do the reconnect, but hopefully once done it will be one less thing to worry about happening.

 

[Farmwife]

I so glad to hear she's doing wonderful.
You both deserve lots of happiness.
Sorry no advise to give.
I do understand about being nerves.
I hope all goes well.


Farmwife

 

[crohnsinct]

You have crossed many bridges and have walked on water when there wasn't a bridge. You and Rowan rock! Totally understand about the fear but if anyone can handle it you two can! I will be praying for you July 2nd!

 

[QueenGothel]

Final Predisone pill today. Yay

 

[Tesscorm]

:thumright: :banana: :thumleft: :thumright: :banana: :thumleft:

 

[DustyKat]

Schweet!!!!!!!! ika:ika:ika:

Dusty. :heart:

 

[QueenGothel]

My uncle was just diagnosed with colon cancer. Had the cancer cut out. Then was released, he had a leak and had emergency surgery bc his poo was dumping into his cavity and caused a huge infection. Now he has an ileostomy, won't be home for a few more weeks. I hope he is better soon. BUT now i am completely freaked out about Rowans reconnect. At the same time I am already sick of blubber butt. Her appliance is not staying on very well having to change it every other day if not everyday. Frustrated and scare all at the same time. I wish I was clairvoyant.

I was checking in on all of you, I am glad to hear you all are doing well right now. Hugs to each of you.

 

[DustyKat]

Oh Mary, I'm so sorry to hear about your Uncle. I hope they managed to get all the cancer and he soon recovers from his most recent setback, poor fella.

I can well understand your fears for Rowan after that! :hug: I'm sure she will be just fine with her surgery hun.

I'm sorry to hear that blubber butt is misbehaving. What do the stoma nurses say about it?

Thinking of you both, :heart:
Dusty. xxx

 

[kimmidwife]

Mary,
I am so sorry to hear about your uncle. Hopefully he will make a swift recovery. I understand your fears it is scary. I did want to tell you I know 2 people who just went through this and both are doing great. They are older and older people are always slower to heal and recover. Hopefully Rowan will just zip right through it all! I will keep my fingers triple crossed for her!

 

[QueenGothel]

Today Rowans ostomy retracted so far in I cannot even see it. I had to change her appliance 3 times. I took her into the ER completely freaked out by the whole thing thinking they would fix it. They sent me home now her skin looks terrible and idk what i am going to do for two more weeks. They moved up her reconnect to July 3rd.

My uncle is doing ok, Rowan went and visited him yesterday and they compared stomas. She said, "Momma he was sad but I showed him blubber butt and he smiled at me and I think he is feeling all better now. " Love this kid.

Now I just need to figure out the stoma situation. STRESSED OUT again. It was great while it lasted. I need a WOC nurse ASAP.

 

[crohnsinct]

Oh what an angel baby she is! She was definitely put on this earth for a purpose. And so were you girlfriend! I can not even imagine your stress but if there is anyone who can do this it is you. Is there anyone else you can bring her to tomorrow? Ugh! No advice but lots of hugs, kisses and prayer coming your way:rosette1:

 

[LilyRose]

Just to say "Thinking of you'. You and Rowan have done so well.

I hope you can get all the support and advice you need to get through the rest of the time with the ostomy and ask all the questions you need about the reconnect. Hopefully that will ease some of your worries. But of course nothing would take away all your concerns, they are really natural.

Thanking of you,
LilyRose

 

[izzi'smom]

i am thinking of you girls too!!! I am so sorry you are having so much troubnklke...I hope that the reconnect goes super smoothly. (((hugs))), mama!

 

[Farmwife]

Sorry to hear the new problems.
Such an angel to be going through this.
Hang in there two weeks to go.

Farmwife

 

[Tesscorm]

Mary, so sorry you are having these problems! Just catching up and sorry to see that Rowan's been hitting some bumps!

Hope all is sorted out soon and you get all the answers and reassurance you need to move ahead! :ghug:

 

[QueenGothel]

Well we have been admitted at UofM children's again. Rowan started throwing up the night after taking her to the ER. She got an NG tube to suck out a blockage. She couldn't keep any food down. Threw up about 6 times between 12am and 2pm yesterday. Then last night she started spiking fevers. It got up to 104.4. They couldn't give her Tylenol by mouth so all were suppositories. They took out the NG this morning and are allowing sips of water today. She is sleeping now. Waiting for a ton or test and cultures to come back. Her output smells rancid so there is probably a bug or infection on top of the retraction. Doctor think the two are probably unrelated. Just a case of rotten luck. :'(

They did the contrast enema to check for leaks. No leaks they could see but she has a narrowing at the j-pouch to rectum. Tomorrow if they rule out infection they are going to the OR to dilate the narrowing. Maybe try to get the stoma to pop back out. They are not moving up the reconnect now bc of the narrowing they might be postponing it to Aug.

WOC nurse didn't help much. The appliance she put on fell of faster than mine. Going to try again today. Maybe order some convex appliances.

Hoping the fevers stop and that she can leave soon. She was crying yesterday saying... I'll never ever be all better. I want to cry so bad but am fighting the emotions right now.

 

[Sascot]

Thinking of you and Rowan!! So sorry she is having to go through this when things had settled down. I hope it is "just" an infection and they can just treat with antibiotics. Good luck if they do the op to widen the narrowing. Hope she improves really quick so you can get out of there.

 

[Jenn]

My hearts and prayers go out to you and Rowan. Hope they get her feeling good again quickly.

 

[Tesscorm]

Mary, I'm so very sorry for Rowan (and you!). I'm hoping and praying this can all be solved quickly and Rowan can get back to being 'all better' very, very soon!

:ghug:

 

[crohnsinct]

Oh Mary I am so sorry. We will all cry for you! I hope this all gets fixed real fast!

 

[QueenGothel]

Well it is crazy how everything changes from day to day. Her fever is back but controlled now with liquid Tylenol. Her stoma is outputting over 1000ml a day which is causing the dehydration. Now they think it was is gastroenteritis the "stomach flu". All test came back negative.

Once her fevers subside they are going to take her into OR to get a complete look at the j-pouch rectum narrowing. They will be doing 1 of 3 different things, the take down if it is not a true stricture. If it is a dilation and stoma correction we will wait 2 month before take down. If just a small stricture they might dilate and leave stoma alone and do the take down in a couple of weeks. We won't know until they get in there and see what is really going on. Also going to do a MRI before they take a look and push barium to check it out completely for they do see some loops in the small intestines. Idk what is going on anymore. We are praying for the easiest path of course.

 

[crohnsinct]

Praying right along with you!!!! You and Rowan need a break! :rosette1:

 

[QueenGothel]

Going to OR tomorrow to dilate J-pouch. They are only going into OR bc Rowan would not do it awake. Her ostomy just popped back out on it's own. All tests results are good, and no anemia anymore so yay no more iron supplements. We are hopefully going to start solids after OR tomorrow morning and should be home by Friday. She is back to her happy self again but she is really hungry. NPO after midnight. Take care all!

 

[crohnsinct]

So glad she is getting better and that you will have answers tomorrow. We will continue to pray.

 

[DustyKat]

Oh my goodness Mary, what a roller coaster ride you are both on! :hug:

I am so happy to hear that Rowan is on the improve again and you have a solid plan of action in place. Bless her little cotton socks...

I hope all goes with the procedure...sending loads and loads and loads of love, luck and well wishes your way!

Thinking of you, :heart:
Dusty. xxx

 

[Sascot]

Good luck for tomorrow, hope it all goes well. She will be looking forward to eating again afterwards

 

[Tesscorm]

Glad she's feeling better! And good luck tomorrow!

 

[QueenGothel]

Well everything went good the procedure only lasted 15 minutes. There was no stricture, just a small narrowing and they dilated her under anesthesia. Doc said another dilation at take down and she should be good to go. Ostomy is working great and she should be coming home hopefully tomorrow. Started eating foods again today. Fingers crossed we start seeing foods tomorrow outputting normally and that she thickens up a bit.

 

[momoftwinboys]

So happy to hear things are looking up for Rowen, You guys have been through so much. :hug:

 

[crohnsinct]

Rowan Rules!!!!! What a tough, strong, determined little girl. I am so happy things went well and she is feeling better.

 

[QueenGothel]

The kid needs a bravery medal. I think I am going to take her to see the movie Brave tomorrow at the show.

 

[Kat]

So happy to hear Rowan is doing better! She definately deserves a medal! Will be thinking of her now, when I go see BRAVE this weekend. Prayers to your family.

 

[QueenGothel]

Well we were about to be released and Rowans refused lunch due to belly ache and now she has a fever. Wth? There has got to be a blockage they missed above her stoma. Poor kiddo. She is asleep now.

 

[my little penguin]

HUgs- hope they can get to the bottom of her pain.

 

[QueenGothel]

Rowan has had a fever, stomach cramping to the point of morphine, shes throwing up and no ostomy output for 6.5 hours. Ped Sug on call tonight doesnt seem concerned it is 1:30am and I just emailed her doctor. Ths SUX.

 

[Sascot]

So sorry to hear that. Thinking of you both!! Hope she settles down soon.

 

[DustyKat]

Oh Mary...:hug::hug::hug:...sending loads and loads and loads of love, luck and well wishes your way. I so hope Rowan is soon feeling better, bless her heart. :heart:

Dusty. xxx

 

[my little penguin]

:hug: Hope your dock can help the situation quickly

 

[Tesscorm]

Hope the problem can be found and resolved quickly!!!! So Rowan can get back to being her happy little self! :ghug:

 

[crohnsinct]

I am speechless and now may have to sneak my computer on our mission trip so I can rest knowing Rowan is O.K.. So sorry Mary..lots of love and prayer coming your way.

 

[QueenGothel]

Still no output still throwing up. On IV Tylenol for fevers. It has been 21 hours now.

 

[my little penguin]

:eek2: Does the GI have a plan on how to fix this???

I hope it ends soon. YOu both deserve a break.

 

[QueenGothel]

She don't see a GI. Said they would cath her stoma for obstruction. But they also said they would be around 2 hours ago.

 

[QueenGothel]

They cathed her and it was all watery. No bowel sounds at all. They still think it was caused this time by too much imodium that they gave her. Idk what to think but since he took out like 3 big syringes she is sleeping. Praying she stays relaxed and sleeps tonight. I am home and going to get some rest eventually. Probably won't take more than 8 hours. Still no ileostomy output. It is crazy that Imodium can be induce pseudo obstruction. Waiting for her bowels to move again is freaking me out completely.

 

[crohnsinct]

Oh Mary, you poor thing! I am glad you are going to "try" to get some rest. You need it so you can think clearly and be brave for Rowan. I honestly do not know how you do it. I am going to call you Rocky from now on because you fight and fight and just when it looks like you are on the ropes you get up and fight some more. You are truly incredible and it is no wonder Rowan is as brave as she is, she has an excellant role model.

I was kidding about bringing my computer on the mission trip but I get to bring my cell phone and I just may have to have hubby check the forum and update me via text (hmmm never said anything bad about him did I nah...not prince charming:king:...my night in shining armor:wub:.

 

[QueenGothel]

ALL IS WELL. They did the take down. Idk if you all remember but after her colectomy she had this weird piece of fatty tissue petruding out of the top of her stoma. That fatty tissue was strangling her stoma and causing the blockage. All the intestines looked great to surgeon explored everything and decided rather than give her a new stoma he did the take down. She is asleep now and we are thankful for all the prayers and good vibes sent our way.

 

[KazT17]

Hope Rowan is recovering well. I have been watching this thread for an update. Thinking of you all often and wish you all the very best xx

 

[DustyKat]

:well:..

How are things going Mary??

Thinking of you both, :heart:
Dusty. xxx

 

[QueenGothel]

She has a UTI and a wound infection. Starting IV antibiotics today. she is sad.

 

[DustyKat]

Oh my, poor baby......I hope the antibiotics turn things around for her and quickly!

Sending loads of love and hugs your way...:hug::heart::hug::heart::hug:

Dusty. xxx

 

[QueenGothel]

I started a new thread. I cannot keep things str8, two tmany threads going.... Oppps.

 

[DustyKat]

Oh Mary, no oops :hug:, so understandable hun.

Dusty. xxx